Skip to main content

tv   Key Capitol Hill Hearings  CSPAN  July 24, 2015 4:00am-6:01am EDT

4:00 am
unique? director raises the issue of for a rate spend our in force resources always. that is what the administration is doing to try to do everything. we are focused we are strategic the government had the ability to act on that deportation. i have heard that comment
4:01 am
much today the ability to take action existed and somehow that is not recognized. >> you suggested century cities are not afraid to report crimes but sees that differently. >> i yield to my experience. >> the president's policy is to seek custody of those convicted of crimes better not charge. >> the only vehicle for that to happen for i.c.e. to be notified is the detainer process. that is not working we cannot do that so if that is
4:02 am
doing time in jail ben i.c.e. has an idea of when they are getting out to. but for the 58,000 people that i book every year that are out on their own recognizance. that was about no notice or warning they did not have the ability before i have to release them. >> then head of amtrak could not find time after the tragedy in philadelphia to call those eight families affected so there is a pattern of practice that people not being considerate of the tragedies that affect our citizens. >> mr. steinle thank you for beautifully capturing the
4:03 am
essence of your daughter and who she was. i have read everything i can get my hands on and last night i which - - watched the clips of your family member the type of person our country desperately needs thank you for sharing her with us today. >> i would like to recognize my sister who is hearing grief to support s - - us and we will carry this forward and hopefully some good will, from her death. senate that is the perfect segue. can i suspect to tell them
4:04 am
the crime scene photos never leave your head. the crime scene yourself you never get out but the hardest part of her most law-enforcement officers is to talk to the families. because they have the best questions. why? not just law-enforcement but all the way up life altering question so tell the people you work with how grateful we are this is something i am struggling to understand.
4:05 am
i had probable causes for mr. francisco lopez sanchez a five time in a legal convicted interest some members on this panel could have won that case in court. >> that is my understanding. >> why a detainer? why not a warrant? >> i don't claim to be an insider but there were certain they failures but it is overarching policy level decision to not challenge nor in force contrarian bias that is in part to the suspect. >> even in a sanctuary cities would have to honor a federal warrant? >> because the bureau of prisons have honored a local warrants.
4:06 am
>> yes. we had a discussion why don't you just trade the eddy cater process and to probable cause to be previewed by a magistrate but there are 93 federal districts in this country including three territories and if we would supply one additional magistrate i assure they could handle the workload to review the probable cause day cater declarations. it is easily fixable there just has to be the political will to do that. >>. >> sam francisco decided to dismiss the warrant? >> a. >> guy would be shocked if it would have gone forward but they could add of dismiss it with one month to go. >> correct. >> they could have dismissed
4:07 am
at any point therefore he never would have been returned to the city of san francisco. >> that is the fact. >> mr. steinle those are the questions i would be asking. you knew you would dismiss the warrant. you knew that. hell, i am not even sure that drugs are the goals so you know, the case would not be prosecuted so why did you wait until he was in your custody leading to this result? >> one other thing. to both law enforcement officers had you ever noticed through your careers that will slow start with misdemeanors then work their way up to aggravated misdemeanor than a felony rarely do go from zero at 100 miles per hour and when
4:08 am
you do and commit a murder or sexual assault or kidnapping you are in jail. if you have a decent prosecutor and a halfway decent case they are already locked up. says we accept the fact you don't go from zero up at 100 we are missing the boat if we focus on felonies when it comes to background checks for those who want to be in this country. all misdemeanors are not the same. speeding is a violation and. property damage george d y or personal injury i get that. but with only felons. and to learn their lesson
4:09 am
the future predictor of behavior when you have the consequences to deter the behavior it is only aggravated felonies to escape scrutiny even under the highest priority. >> i am not of time since this deals with barter issues for the sake of argument there are 11 undocumented people i know no the of a percentage but of that what percentage of felony or what we consider to be a serious misdemeanor? >> i don't know the exact your answer i.c.e. estimates
4:10 am
2 million. >> just let's cut that in half to say 1 million. to be conservative so what is the administration's plan to remove the 1 million? to wait until they real event -- a real friend? does anybody know the plan? i am honestly access -- asking if the strategy is to wait until the 1 million re-offend somebody will have to apologize to a lot of moms and dads. there is the strategy rather than waiting for the 1 million.
4:11 am
did you cannot place the decatur however small it may be. what is the plan to identify that universe before the real event? not all at once. >> ice -- i.c.e. should have an idea with their database and do those individuals are the was a significant risk and they have the ability to take action of the assistance of law enforcement is a great question. >> they have the ability just like any police officer >>.
4:12 am
>> for a closing remarks you may have? >> i would ask unanimous consent there have been several comments made that our just not correct. the prior day's for removal of abies cd and the other witches terrorism are getting this or any felony as well as any aggravated felony or a single deal why or when? but i would just note clearly there was of failure
4:13 am
here. no question about that. but fda jurisdiction has a multiplicity that have been issued to be dismissed? if of bench warrant was for a rape you would not want that. to sort through with regularity to major and tuesday the system is far from perfected is often the case that individuals who commit an offense and those
4:14 am
who lost their president residents over convicted of a crime. not saying it is perfect but as we move forward have clashes in the opportunity to work together with whole safety of the community and thanks for recognizing me. i yield back. >> with respect to the corridor i do want them and forced especially if eric it is a victim you could try it or dismiss it.
4:15 am
the to return it back to the agency or entity you will not release them. give san francisco with 30 days. good luck finding pain of witnesses. but all that could have been done. so in closing with those federal tax forces if you ever tried to unlock the federal case or the state cdu i've lost one dash lot and you are smart enough it is too complex for state and
4:16 am
local law enforcement but they give for your courage for those of us even if you are not apparent i could not have done that or have the grace but could not do it. please let the men and women how grateful we are. with that we are richer and - - adjourned. [inaudible conversations]
4:17 am
4:18 am
[inaudible conversations] so it could morning is
4:19 am
connected were named. to let get alzheimer's cost of care we are here to talk about a disease that steals language and memory and of the person we once knew one at a three people dies with dementia so they know the impact of this disease. i see very few hands not up. it is a surprising and have my own story my father was the theoretical physicist with the life of the mind and in the end had profound dementia it betrayed him he tried to get into assisted living facilities and had to take a test kit you name
4:20 am
three animals and he could only come up with the name of insect spider and fly and aunts and it was a painful moment for all of the sand in the end he could barely feed himself it is costly emotionally and financially. to spend to a hundred billion dollars per year is the estimated cost. hearing from researchers and to coordinate the response. but to get rolling joy in the conversation we are also streaming at the atlantic.com and we will
4:21 am
take your questions after most of the session now we will hear about the association's work and here to lead the conversation. >> the floor is yours. >>. >> i am delighted to be here i am pleased to have this discussion and i also had day personal connection my friend has been diagnosed so i have seen to save the emotional toll that it can
4:22 am
take to ask about the role of the alzheimer's association practically every day there is another article or a promising development. how does organization fit into this? >> we are the leading non-profit entity in the world with alzheimer's research so here in the neck estates we support provide support. and to us to indicate the devastation is so great they need that support each and every day. en then dedicated to ending the disease to go longer provide that support.
4:23 am
>> round the globe -- around the globe and also with the chinese government we work hard to find research but we also work hard with people inside the beltway to public policy'' will ultimately allow a change in the course of the disease 15 million caregivers at the 47 million people worldwide the scale $226 billion in care that goes up to 1.1 trillion if we cannot change the course
4:24 am
how does that work? >> we find globally we have researchers around the world, 6,000 of them. we have access to the very best scientists around the world is the largest research reading in the world they are working every day on this problem as well as try to move public policy but we also convene to gain collaboration so we don't
4:25 am
lose the advantage of that communication it used to be every two years but we moved in a duel because that exchanges so valuable. >> is research the only thing you focus on? >> no. every community around the united states we have chapters to make the difference in people's lives every day because of what you experienced yourselves. mother has had this disease and my wife's mother just died in the last several weeks. 15 million caregivers right now but all of that is set to triple by the middle of the century if we don't change the course. those people need that help every day.
4:26 am
>> how do you know, in any given time with the support they have to get from this government and others? how to know which research to focus on? there has to be so many that are out there. >> first it is absolutely true i don't. i am not a scientist. we have access to the best scientists around the world. many of them work with us on the ongoing basis. when we get applications for projects or for funding we have thousands of people around the world to help choose of projects along with the advisory council who have people at the top of their field to lung data project on a vertical basis
4:27 am
to have experts from around the world to take a book to see what they think is the most promising. we have funded what is that cutting an edge of research when others have not been able to. >> we funded technology early on that identified with the plaques of alzheimer's we funded research where no one else would back than the time period that has changed the identification of a plaque now leads us to know they accumulate 20 years in advance of symptoms it is very different even from a few years ago to intervene in advance of
4:28 am
symptoms to slow or stop the progression even by five years we a could cut the impact in half with human devastation and the cost. >> but the field is still a difference to be away from that. >> ultimately to realize the ambition we are a distance from that but we are within a reasonable period of the initial treatments and we have treatments today that don't actually change the underlying course of the disease but it will take years to you develop that is the sufficient treatment not unlike hypertension or aids
4:29 am
so it is not one drug or a silver bullet. >> but in the near-term to slow the progression? >> if we can see the drug with a clinical effect then there are prevention trials under way. the association was an early funder of those to get them started it would not be possible without the technology that i mentioned so they have the potential to do what we are discussing to slow or stop the progression. >> if you make the argument to members of congress to determine how much support you will get from the government which has to be the biggest source what is the argument?
4:30 am
there are other important causes but how low to make that argument? >> i am proud to say we make great progress on cancer two-thirds are cured today refunded five and a half billion dollars a newly at the national cancer institute so cancer funding we have seen the results we fund hiv/aids at 3 billion in we have seen the results. heart disease or mortality they all have mortality rates that are down as a result of investments made and that is a triple threat nothing else at the federal level. it is a huge prevalence and growing with a huge cost and
4:31 am
the only one of all the leading causes of death that there is no way to stop it or prevented or even slowing it down so those investments today is about $400 million with $226 billion annually. so members of congress and to give them credit to the chairman and his committee in the house and ranking member marie, of those leaders in the congress have stepped up $358 million investment we need to see that sign into law but that
4:32 am
is a big - - advancement but seven years ago to reach 2 billion and recently, at 2 billion annually? >> yes we are at 600 million sows a underfunded has a direct impact on a the failure of the changing of the of course, of the disease. there is a clear correlation between making research investments and to see if the mortality rate go down. >> is there an alternative if you don't get the federal government funding? it eating in the private sector to rival what the federal government potentially has the ability to do? limit the alzheimer's association we will initiate
4:33 am
on our own to raise the level of funding from private givers. it is impossible with any disease to not have a strong investment of the federal government. there is an enterprise of a nonprofit organization like ours and the private sector. it takes all three sectors to make that work. looked at the gains made in cancer. >> i am thinking if you are sitting down with an officer of the member of congress they know the numbers in their also asked you name it.
4:34 am
>> q haven't dissipated of what has occurred i have been in that situation. it has taken time to understand thoroughly but what is important to this but to give the public to realize the impact of the diseased the with any other cause there has to be a discussion about the issue. there was not discussion about alzheimer's it was taboo. there really pushed us a discussion of things to help from you and your colleagues we worked very hard to find
4:35 am
advertising years ago cancer was not discussed. once it came to public attention it was important to the public things change. funding for research changed at the private and public level that is where were raped -- where a river. many people don't realize it is of leading causes of death and alzheimer's itself is the cause of death based on the cdc statistics and beyond that it is still true today to do a survey that
4:36 am
45 percent of people who have a diagnosis that doctors do not tell them. it is unimaginable. that many don't know half of the people who are diagnosed not told that echoes what happened with cancer so the public discussion is a huge part of driving the answer to have members of congress stepped up. to see what needs to be done? and i will say that another part of that there are 20 presidential candidates out there right now. [laughter] >> 21 as of today. if they have an opportunity to be the first president to
4:37 am
truly embrace this issue, it has not yet truly been done. any of those people or all of them i hope they would all embrace the issue both with congress instead of the sixth leading cause of death for the most recent study indicates it is 500,000 people per year who will die as a result. >> i know there are people who are ashamed and embarrassed. how do change that? is an important part of the story. >> we can raise the discussion to reduce stigma. we hosted day session of people who have a really
4:38 am
rare form of the disease, a genetic form which is absolute. if they have that gene mutation they will get it. that is only 1% of all of them but to see them together to come to that meeting to gather to talk about that and be public is the kind of thing that can truly change so those that step up to talk about this of the single greatest defect. >> i am given time cues but i cannot read it. [laughter] in the last thought? >> i appreciate everyone who is helping us and it takes said huge team effort and i
4:39 am
a thank the leaders in congress who are stepping up even if the appropriations go through we still have to get a much higher. if we make those investments just as he changed the course of the other is. >> thank you. [applause] but as we just heard of those to have the federal budget is stretched with acosta of research where should the of money be going? we have a distinguished research fellow at the eli lilly and that dimension of
4:40 am
aging branch at the national institutes of health. >> good morning. we will be throwing all lots of facts and figures that you and i will focus the next session on one that we just heard in the last conversation that alzheimer's is the sixth leading cause of death of the top ted no way to prevent it or slow it down or stop it from developing in the first place. we have a great panel for this.
4:41 am
why has alzheimer's proven so tough? >> it is a complex diseases and that is what we discovered over the last decade that there are different risks and yours may be different than mine. so to untangle all of that has proven very difficult. it is likely treatments will be different for individuals it is more the precision that is in a little too late to identify the risk factors and then to actually attack those four different people. >> but that could be with cancer you don't fully understand that. >> cancer started in the 1970's but the center's program started in the mid-80s so we are behind to
4:42 am
have the research efforts and so the focus has come later. >> this is what you have been focused:-- john but until relatively recently they did not think of it as the disease. the original patient had a very young onset of course, for days or 50s they see it as a disease but the medical community late '70s or '80s they thought it was inevitable that there is no way to intervene. but beginning in the '70s and '80s we understand the specific pathology and the abnormality a certain high risk groups and that al -- opened the opportunity for
4:43 am
us to begin to develop a pharmacology to intervene to slow the process is done people that is clearly abnormal. relate to the game but now we have the tools that allows companies likely to think we could have a medical impact that will be real and meaningful for patients spirit talking about that period when finally research started to flow. drug after drug after drug looked promising then would fail in the clinical trials for even in accelerate. the basic issue, we do have some insight that plaques form in the brain to choke off the neurons? >> i think one of those
4:44 am
drugs actually make patients worse from the results of those studies have been published. but what we've now believe that we did not understand that they were causing the adverse events but when we go in to renew area that is highly complex we have to learn as we go along and each new effort with that intervention of the specific effect if it doesn't work it closes of that effort to direct toward another area then we get better. so if we see compounds that have very specific defects that seem positive than double the to better efforts i don't think we should view failure as the process.
4:45 am
the process is working but we will have lot of dead ends to work for a. >> we learn from the trials they're not failed if we can understand why things did not work. absolutely we have to test. this is the way and it is a systematic process. everybody would like things to happen very fast but we have to do due diligence. >> bring us up to speed with the landscape now because we are hearing what may be the glimmer of promise to turn a corner? what is the most promising things in development right now? >> we front basic science that goes into the discovery process also some trials and
4:46 am
we will partner with companies to leverage our resources so there is of large landscape like the drugs are very exciting now because we realize we do have to gore earlier when the changes over. so part of the extra bucks now they have risk factors but they do not have dementia ended interview that could slow the process. that is very exciting to go earlier and tell we had that that stand to show the braid we cannot see these changes to occur early so now we can identify it earlier in that is very helpful so looking
4:47 am
at these diseases it is extremely important general tell us that has an effect. >> the amyloid related compounds are the most advanced coming from a lot of work supported by a the n i h that identified the biochemical pathways that lead to the allied plaque so the pharmacology around that is building upon those advances that is a leading-edge to develop and allow us to develop those who have the positive plaque way before they have symptoms that is 10 or 15 years even. you get amyloid plaques long before you get to mention - - demand gesso those clinical trials have to go
4:48 am
earlier and beyond that with the other pathology that is less understood but the neurons and also with one of though no known risk factors but i assume over time we will develop other pharmacology approaches. >> sticking on the idea of testing people because we could be 15 years away to be symptomatic so what type of test are we talking? i read a headline this morning that was a saliva test to identify genetic markers. >> the pet scans has been good. the work that is ongoing but we can see the am a lawyer build up to scan people to
4:49 am
save you have high levels you will not necessarily get it but if push to read the increased risk but the older adults that are cognitively normal. >> to be a part dash day annual physical. >> do you test everybody? >> one that convinces people the most is the abrasions and because that allows you of what we can only do but their trouble with that ted is invasive said there is a lot of efforts with less
4:50 am
invasive for less-expensive ways to identify people who might virginia candidate? and a lot of that work of that sort going on that would be helpful. >>. >> as you look at that spectrum that we're likely to come up with a miracle drug or a silver bullet? to prevent caring that? >> rand amyloid is one of the players real looking at but also their other pieces
4:51 am
like lifestyle intervention. so as to have that healthy diet and health the life and in addition to looking at the potential targets there is and pharmacology now but they're working on days targets but there will be unique characteristics that he will get different recommendations i may not get. . .
4:52 am
and so we utilize that information. a lot of what is done is basic research-ke
4:53 am
was the importance of recognizing early treatment. is that important? >> when we hold this conference
4:54 am
two years from now will we be able to say there is a drug that helps prevent it? is it the early detection that helps prevent it? >> we've always talked about the mantra of early detection but the work of this study which are these people who have the genetically form of the disease, in those people we know for absolute certainty the pathology begins 15 or more years before they actually develop symptoms. we have we have been able to map out that traditionally in those courageous families where this is developed by a courageous families where this is developed by a single gene mutation. this this provides absolute certainty based on data that that is where we need to
4:55 am
go. >> is the challenge getting people to sign up for these clinical trials? people that are relatively young and not sure? >> it's harder because we have to screen a lot of people to identify people who are at risk. people are very worried about alzheimer's disease. you can understand why it's not just that you end up with something that will cause death but causes great disability and burden for the person and the family members. people are worried and people are anxious to participate. we have been very encouraged by that. it's just that the screening process is very intense for these prevention trials. we need to make sure we have people that do have that level of risk. it's challenging but heartening that people are really interested in volunteering. we can't do it without the volunteers. >> when you talk to people as we've seen with many people in this room, if you have watched a relative or someone you know go through the disease, it's a great motivator to not want that have happened to your children or whatever. that is what really gets people's interest. you see in families where they've had two or three cases in the same family.
4:56 am
often time there is a lot of fear in the family about what will happen down the road. it's a great motivator to get people interested in clinical trials and support the work they are doing. >> the one thing i want to touch him briefly is that alzheimer's occurs at a greater rate in women than in men. a greater rate in african-american population than white. is that helpful, not helpful in terms of people getting it, but helpful in terms of identifying what is going to stop this to study those different populations in which it manifests itself differently? it is critical to understand the difference in the population. one of the reasons we know for
4:57 am
women is because they live longer but it looks like there is some research that suggests that's not the only factor that's going on with women. >> with people, afghan american, hispanics, some of them are related to health disparities. whether you get treated by it dr. and whether or not your cardiovascular disease has been taken care of. it's it's important to understand what's happening with diverse populations as well. >> we've been talking about priorities, talk to me about the priorities are we getting the funding right in terms of cutting-edge research to find a cure? there's the flip side of the coin of providing for long-term care and assisting people who are afflicted by the disease and people who are trying to take care of themselves. from the federal government point of view -- >> our focus is on brief research. we want to find ways to intervene with clinical trials
4:58 am
in science. we come at it from a different perspective. different aspects of the federal government have other challenges. for us it is a research mission and we have to realize that. we equally care as well and their care is extremely important. my people mention their family members, my father has it and it's always difficult. i'm his primary caregiver and i can see the importance of the caring. both aspects are critically important and it is a challenge on how to strike the balance but there are a lot of good people in policy trying to figure that out. >> since i work in a for-profit company, we try to identify areas where there is a medical need and the science has advanced to the point where we can imagine there will be a medicine that we can produce there. our focus is on the medicine and the diagnostic tools to go with them. we are well aware, from our
4:59 am
medical trials and interaction with physicians, that if there isn't the appropriate incentive for them to make the diagnosis if there isn't the appropriate caregiving systems in place for families to take care of these patients, the medicines will never be used. all that has to go together. >> i'd like to open it up to questions now. if you put your hand up i think we have hand up i think we have microphones going around in the back. anybody with a question on where the research is going? one of the headlines we are reading this week in terms of different tests and early phases? >> right here in the front, will bring the microphone to you. >> thank you for coming here today. my question has to do with misdiagnosis of alzheimer's in patients. can you comment on that. sometimes many brains drogues strokes wipeout brain tissue and
5:00 am
then it's diagnosed as alzheimer's. i want to to understand how we can better make that diagnosis for proper treatment. >> i can give you a first comment, we need to understand there is a difference between dementia, which is the syndrome of having cognitive loss which is progressive over time and alzheimer's which is dementia in a form of abnormality. if physicians do a careful examination usually get it right. sometimes when the clinical picture is not very clear, you can make two kinds of errors. one is we don't want to make an error where we diagnose someone as being demented when they are not and you don't want to miss a misdiagnose someone as alzheimer's when they have something else going on like multiple strokes. i think the tools that are being developed
5:01 am
like the pet scan are helping us make advances but it's still an area of some concern. >> another one? yes sir. >> we heard from harry johns very articulately some of the work that is being done both here in town and around the world. since this is a form i'd like to know your thoughts. is it ideas or funding? >> i think we have moved into an area era where we have a lot of plans. we don't go into an area where we don't think there is a possibility of progress, of actually producing medicine. we have plenty of people working on diabetes and cancer and heart disease and they all think they
5:02 am
have great ideas and would like all the money spent there. we tend to win some of those arguments. we kept the we kept the company in the business for 27 years. i'm not a fan of just throwing money at things where it can't be well spent, but i think think if you looked into the nia portfolio and the alzheimer's association, there is a lot of productive science fair that is currently not funded. >> i'd i'd like to follow up on that. you've mentioned you work for a for-profit company. how much is the first drug that works, that that is shown to prevent alzheimer's or at least slow it's progression, how much is that worth? >> i actually don't work in that part of the business. i don't know. i think we have to assume that it's going to be worth something other what otherwise we've spent a lot of time and i might have to look for another job. if if you look at other therapeutic areas that have lost, if you look at serotonin depression
5:03 am
once they found that that worked, lots of companies started making that. once they found out cholesterol was a big a big risk factor, lots of companies produced drugs to lower cholesterol. now most of those are generic and they're looking for the next thing to up the game. that's the way i i think it will go. i think there will be, to keep companies and involved there has to be some reward. we have to be willing to pay for new things. that's how we get generics. you get new things and they live to their and and you have to develop something new. >> another question. >> my question relates to the type of research being done. i look at these slides that talk about clinical trials and it
5:04 am
seems like most of them are focused on testing drugs. when you talk about lifestyle change and other things, why don't we see more studies that are focused on changes in lifestyle, particularly with children of patients of alzheimer's and those looking how to prevent getting alzheimer's. why are we looking at those types of things? >> the lifestyle intervention isn't profitable for a company you can't patten that but the organization does support a number of things like that. there is a alzheimer's information webpage. we are supporting a number of trials that look at both dietary intervention, cognitive training as well is exercise. we are very interested in that but we don't think that is going to be the thing that will stop or slow progression. it's probably something we need to
5:05 am
add to whatever we are doing with drugs. lifestyle is extremely important for cardiovascular risk, diet, exercise and we are working on those. >> there's a lot of work that has been done in animals and a lot of observational studies for people who live a high healthy lifestyle. it looks like their onset of disease is much later. this is why we have to do the clinical trials. they are underway. i'm looking for volunteers, i might add. >> okay. step on up. i think we have another question. >> thank you, you have mentioned cardiovascular disease a couple couple of times. is there a relationship between the disease and alzheimer's?
5:06 am
>> well, it's not quite clear. there are vascular changes in the brain that can cause small strokes that can contribute to dementia and the brain, like any organ, can have multiple kinds of pathologies. we often see people who have some cerebral vascular damage and alzheimer's disease as well. i think, loring may know this better than i, but the connection between the two is not very well established. you also see things that we really don't understand all aspects of the disease as well as we should. >> that is a risk factor in dementia as well as some people were trying to understand what is the pathology. cardiovascular risk is a risk.
5:07 am
those are things that may not prevent this disease but they may allow you to live longer before you have dementia. those are lifestyle factors that we can do something about. you can't do anything about your genetics, but you can make sure you are eating a healthy diet. that's a lot easier said than done. i don't exercise as much as i should given what i know. i think it's important to know there are risk factors. we can't say that if you exercise you won't get alzheimer or dementia but you might be able to extend your healthy. as you age. >> thank you for the excellent dialogue. my question, and forgive me i might be might be putting you on the spot, from so many of us advocating this, the discussion has turned a path over the last couple of years emphasizing so much on the early side of things intervening early and getting therapeutics to folks before their symptomatic. is there there still a pathway, are there still therapeutics being looked at for
5:08 am
those who are already afflicted? something to offer families who are already dealing with this which is an elusive target and a very difficult target. >> i will start because obviously, i think you are right, i don't want people to think we are not interested in individuals who have the disease or will be getting it. we are still working we do a lot of funding and there's companies that are still looking at intervening at a later stage when someone has mild cognitive impairment which is the stage before full-blown dementia or dementia and there are things were looking at from behavioral symptoms that occur later later
5:09 am
in the stage of disease like agitation and other symptoms. there's a lot of people looking at that. we are also looking at regeneration. is there a way to have cell regrow? there are a lot of things going on that are still looking at late stages. it's important, if we can get something to prevent that will be terrific and will help a lot of people, but we will always have people who get disease. the always have people who get disease. the research is ongoing across the whole disease continuum. thank you for asking that. that's very important. >> as scientists continue to refine drugs that will hopefully prevent it, hopefully our great-grandchildren will never know anyone who had alzheimer's is it possible as the same drug that continues to be refined will be of use to someone who is five or six or eight years after diagnosis? or are you looking at a totally different category of pharmaceuticals question marks. >> they talk about the way these drugs were first tested. >> i think lawyers point is quite right. if we can slow to disease, we are going to have a lot of patience patients that will need
5:10 am
treatment. it's further down the line but i do think there is the possibility that if we could slow the degenerative process the brain still has a capacity for for regeneration. people do regenerate and re- grow synapses. that's how we learn that those regrow. if that process could be restored you could imagine a time down the road we could see some recovery where the disease has taken a hold. if you stop the bad and foster the good you could get some recovery. >> i had the opportunity to attend the conference in february and wondered coming out of that what steps you see important to take in terms of diversifying the participants in
5:11 am
trials given the effect on particular population sectors of the disease. >> that's an excellent question. i think the companies struggle with that as well. how do we reach out make sure we have a diverse population and everyone's being included in the trial. there are a lot of efforts underway to enhance recruitment efforts and outreach efforts. they have african-american networks women against alzheimer networks and they are trying to include everyone in the trials. we don't want to leave anyone out. it's very important. >> just to give you a little industry perspective, when we we develop a new medicine we usually develop it for the use around the world. we generally would not develop a medicine that that would be just for people in the u.s.
5:12 am
many other countries have a requirement that in our late phase clinical trials we include people from those country in those trials. china, japan south american countries and others. in the us, to get a patient population in your trials that is representative of the patient's as a whole is an ongoing struggle as she mentioned. it's not unique to alzheimer's disease it applies to all sorts of medical trials. it's a constant struggle and were always looking for help from groups like us. we want to broaden the recruitment effort in clinical trials. >> that focus as focuses on something we discussed earlier and you were surprised about the number of people attending from asia and china and japan and all
5:13 am
over. >> the aging of the population that we see in the u.s. is actually amplified in some of the asian countries. japan korea etc. we et cetera. we know this from our own clinical trials that there is a great desire to have new treatments in all of the countries around the world. i was was impressed as i walked through the poster section about how many posters where researchers were from korea, thailand, japan etc. that were coming to washington to share their knowledge and perspective. >> it's a global disease, for sure. it's disease, for sure. it's not just affecting western countries. >> i want to throw one more question out. in terms of having a national plan and involving all of the different groups that are involved three years ago the
5:14 am
obama administration released a national plan to address alzheimer's and the goal struck me as exceedingly ambitious. by 2025 so in ten years, they were going to prevent and effectively prevent alzheimer's disease. does that strike you both as realistic? ten years? >> the way we look at it is it is an aspirational goal. we definitely want to be there. it has to be a little bit realistic as well and we know that's a short timeline. as as one of the summit participants said in drug years it's like the day after tomorrow. we know it's really going to require a push and it requires momentum from both the policymakers and the appropriators that this is
5:15 am
important and we need to put the dollars for the research. we do need to have funding to do the research. i think everyone gets it and we want to be there in 2025 and we are striving to get their. >> i would just add a couple of things. the timeline for drug development is longer than we would like it to be. it's just part of nature. it's about 15 to 20 years when the fastest it could be approved because it has to go through a lot of process steps. i think there are things in the pipeline now that are being tested but if they won't cure the disease but they slow the progression for a few people that is essentially a cure. if you take someone who is 70 years old, who would who would've normally gotten the disease and you can push it out ten years, that's almost a cure for many of those folks. i think what we need to recognize is that this goal, essentially, is a call to action about how robust this whole research enterprise has to be in order to have that steady flow of new medicine. it has to be higher than it is now.
5:16 am
there's a lot there but it's not enough to keep the steady flow. >> 2025 won't be the end. we will still be pushing for more treatment but we want to have something that will have an effect on the disease. >> think you both. [applause]. you can stay right there. i'm not going to let you go. as we keep discussing about the 5 million adults that have alzheimer and the many many that are supporting those individuals. they are funding expenses and making sure they don't walk away and get lost all the while watching a loved one's mind to deteriorate.
5:17 am
he has been taking care of his mother for more than ten years with the help of family members, friends and neighbors. tiffany wrote tiffany wrote about her experience managing her aunt jackie's disease. they are here to talk to mary louise. take it away. >> welcome to you both. i don't know how much you are able to hear backstage but we just than the last half hour talking about the search for a cure for alzheimer's. a race for cutting-edge technology, early detectors, trying to figure out how you prevent someone from getting the disease and now that you've joined us we are going to talk about the flip side of the coin. there is the race for the cure and there is the figuring out how you help help people who are suffering from this disease. you have both dealt with this in
5:18 am
your own families and i'd love to hear some of your stories. you have both written about this as a journalist and i want to hear something you have wrote to frame our conversation. you wrote lost too often in the discussion of the cure is a more basic, more immediate and more important question, how can we better care for those who suffer from the disease? you go on, dimension comes with staggering consequences. it's not the drugs or medical intervention that have the biggest price tag, it's the caregiver of the dementia patients. tiffany if i may, let's use use that as a leaping off point. you were living through this with your family. you are learning very quickly how the coverage varies state-by-state.
5:19 am
medicaid can help, medicare often doesn't. can you give us the landscape of care options and how much people are getting? >> when i became a caregiver it was a crash course in what to do. my dad had been taking care my aunt for seven years but when he became ill i took over. i was 29 at the time. i had to care for my aunt and my father. i think it's a common experience when one caregiver suddenly can't do that anymore. i was shocked that medicare and medicaid don't really cover long-term care costs in a way that a lot of americans probably believe. 40% of americans over 40 don't realize that long-term care isn't covered by medicare we found ourselves in the middle where my aunt didn't have enough
5:20 am
to pay for skilled care but she didn't qualify for skilled care either. she needed more care than we could provide at home but we couldn't afford the quality of care we wanted and there wasn't a lot of public support. >> you described a moment in the article when your art aunt jackie reached age 65 and you breathed a sigh of relief thinking medicare will kick in and you had a social worker they're explaining there was nothing wrong with her. >> there i was thinking she has early onset alzheimer's for the first six years were really tough financially and now she's covered. she needs help a sitter she doesn't doesn't need ivs and what an rn can provide. this is what this covers, this
5:21 am
is what this covers. here i'm thinking we are getting discharged in three days and i have no idea what i am going to do with her. >> this is something you are living with and dealing with every day. your mother is 9292 and she suffers from alzheimer's. >> i moved her up from jacksonville florida in 2004. i got a call and they said your mother needs help so i went down and packed her up and moved her up to my place. >> you have a home where she has another bedroom. she's been suffering from alzheimer's for ten years. what are is a typical day like caring for her question. >> she needs supervision and like we were discussing earlier about the different stages she is in stage i. i have have to get her up, i have to make sure her hygiene is taken care of. other than that she pretty much gets around pretty good.
5:22 am
>> how does that work with your own work? you work the the night shift. >> yes. >> she has personal care assistant who comes in. >> what do they do? >> they stay with her and get her medication, prepare her food and take her out every now and then. >> in terms of what kind of help or guidance you have gotten from various federal agencies in your health provider, tell us about that process. >> early on i thought i had a do everything myself. it was it was a little too much but my mom did qualify for medicaid which pays for some to come in which gives me more time. >> you must have a network that helps you as well? >> yes, yes, family and friends, church, my community.
5:23 am
for you, you described a dramatic moment where you are trying to work full-time. >> your aunt was in your care and she was going to be released from the hospital and you had no idea what to do. >> i had a support network on my mothers side but on my father side it was just my aunt and my dad. i thought, this is it, this is me. i have to juggle, am i going, am i going to quit my job and move back home. something i had worked so hard to get to d.c. and work and have a job and i felt all of that would disappear in a moment if i had to be a caregiver. i was also worried who is going to pay for the needs she has of i quit my my job. i think it's something a lot of caregivers struggle with. if you're in your 40s and
5:24 am
50s and you're trying to figure out how to continue your own career and plan for your retirement while also caring for someone. but she was in the hospital i just thought i i had to get her somewhere safe. i said i would figure out the money thing later. i was in survival mode. i didn't have a big plan. i kept telling my dad we need to decide. at some point she might get too sick for you to keep her at home. you might not be able to come back and forth from work to check on her. what are you going to do then. when he was happy hospitalized and she was hospitalized at the same time, we had a make that make that decision. >> you made the decision difficult one i'm sure to put her in a assisted-living facility. it's very expensive. you are just heading up in terms of cost. >> i think one of the things i found we used that it was hard to find quality care. the assisted living facilities
5:25 am
there are some that specialize in dementia
5:26 am
>> i was asking them what was available. and then i joined the support group. >> is there something specific that would have been really useful to know when they started this process that you now know. >> the help is available, like i said. >> you described a line that you
5:27 am
wrote. what i needed most in all of that and so that access to an expert to start navigating the system. but you are somewhere where i am not. and you feel like you don't have a lot of time to the agency. saying this is where you need to go, this is who you need to call, here is a person that can help with your been a reds. and i think that their alzheimer's resources and they have had time and i think that i
5:28 am
wish that i had been an advocate early on and your aunt was eligible for military benefits she had been a vietnam war vet. had that and been getting paid all along, i would've gone a long way towards paying for it assisted-living and eventual morning care and research in terms of where federal money is directed. there are specific things that we have talked about. and it would have been useful. and you are trying to balance your own life in this way.
5:29 am
>> hopefully they can put this process through. a lot of them say that okay, here is what you need to do here is where you need to go. >> from your point of view it sounds like more information. >> yes, for sure. and i think that you get information from lots of different places, doctors, social workers but they really didn't have time to help in this way. >> okay. >> questions from our audience. i know that it sounds like we have a show of hands this is something that a lot of us are dealing with or have dealt with in our own families. questions on the caregivers.
5:30 am
spume and it's actually technology for your grandma. and what we are hearing is the same thing, people don't know that it's out there. and you can locate your mom within 3 feet and we know that there are technologies out there that can help. but i think this conversation highlights that we need to do in the meantime. the number one cause of stress is the person getting lost. i did a study spending up to a million dollars a month in search and rescues and i think
5:31 am
that everyone is losing here. i just want caregivers to know that in the interim you can be looking at technologies and not just gps and robotic medication managers in these kinds of things. i know that there might be questions, but there could be things that we need to be talking about how can the health caregivers in the next 10 or 15 years have the answers. >> thank you. that's a very good point about how a simple technology -- i could use that for my father as well. multiple applications. [laughter] >> let's go right here. right in front of you. >> it is just an idea. is this on? >> it's just an idea i'm
5:32 am
curious. where experiences can be you know, whoever the manager is on their can you know, have them list how to proceed. certainly trying to navigate the process is just crazy by myself. but being a strong-minded person i managed. in the end finding the navigator just seems so key and something that i experienced with my father and that includes how we have numbers to call and may be it can be. >> thank you. >> we don't know if you want to respond by that. i was struck by something that
5:33 am
you said. and when you are in the thick of it, juggling so many balls. >> sharing experiences, what they have been through. >> we have a few. >> i found it kind of striking. we talk about what is going on in the community, but then when we talk about how things are available for caregivers we have the end-users up here, but no one is up here talking about what schools are available we
5:34 am
are training caregivers in the mid-atlantic and this has some great thanks. we find that we have staff in for the latest and there are all kinds of things and we are learning more about those tools, like these people, and it's not as obvious as it should be right now. >> thank you.
5:35 am
>> as i was listening to the discussion here just by what each person mentions him a one person is talking about giving care in the home, the other person is talking about the long-term care communities and we focus on those who work is work on the facility come in to see how they are trained with the jobs that they do. so it's hard to recruit people to work in those situations and give the quality care that we both expect and require at the rate of which they are paid. that is a whole new segment that needs to be addressed. the whole idea is not a well-regulated area and so from
5:36 am
the point of view and there's a lot of activity done in those areas. >> as you have talked about with your hands and assisted-living and various facilities, people mean well. they don't have to train necessarily for someone who has progressed. and i think what you saw, i felt like the nurses and the a that were working on it were amazing in so many ways and they were alsorworked by the minimum age. and i think it says something about our society.
5:37 am
especially when they pay the caregivers so little. so i felt like it was the perfect structure to have issues. because clearly that wasn't going to be part of the staff. it was a justice issue. warning them to have adequate rings. >> a lot of them say we didn't. so how do you teach a person? i did not teach a person to redirect. there is a way to communicate with people.
5:38 am
>> as a person. exactly. so you have to be around people and look at resources from different websites. >> okay. we have time for one more question. >> thank you. good morning. i am the local chapter president of the local chapter of the alzheimer's association. we think we do a lot of good work in trying to reach out to people with churches and support groups and doctors offices and pay for advertising so people will find us. we are not hiding.
5:39 am
>> i think it's a great resource. pages had a lot of good information. it's interesting to try to navigate another state or some such user so this antistate. so having to work with this i also felt like it wasn't one thing that these are all the public benefit that you are entitled to. medicaid different nursing programs. those are so specific that it's hard to find that in that direction. >> i would also recommend that as well. and if you can look up more about them so more people would no.
5:40 am
>> okay. >> thank you very much for sharing your experiences. we appreciate it. [applause] >> thank you mary louise. thank you tickling. and we had the resources. we are noting that. there are caregivers, hundreds of billions of dollars of costs, emotional, incalculable. the string on the system is going to get worse and by all accounts it's probably one of the foremost policymaking challenges out there. next up i'm really pleased that we have two senators working on
5:41 am
that challenge and both believe that a coordinated national approach is essential. she is a republican senator dick durbin is leading the charge to fund biomedical research at the national institutes of health. >> shake your hand like this. wake up. and you all look really foolish and it's great to be with you. we are going to be joined by one of the other great political leaders, policy leaders, people that are thinking deeply about challenges and i just want to start out and say, we were just talking about animal house you
5:42 am
are living alone. what i want to know is that anyone, did they buy the rights to living alone. >> let me just say that it's a different experience. >> i think that it could be fun. i think that there's a story there. in any case let me start out. one of the interesting things in this broad subject of investment in health science and in making the nation a healthier place is that you took an angle that i haven't heard many others take which is that the deficit of investment and spending actually has strategic consequences for the united states and i would like you to take it down that path. i was serving on the committee john porter congressman from
5:43 am
illinois, he joined up with them. setting up to double this and i thought to myself that that is an extraordinary feat and i went out and met with doctor collins and i said that i can't do that in this world. and give 5% real growth and i will light up the scoreboard. let me tell you what happens if i don't. if i can't make this investment in research, if we continue to fall behind as we have in the last 10 years, when it comes to research i will not be able to recruit young researchers. they are dropping off with the federal commitment to biomedical research and secondly we are finding that many countries around the world are going to seize leadership.
5:44 am
that includes the european union, china and others, not that there's anything wrong with scientific advancement coming from other countries. it just from a selfish point of view, biomedical research in this country is ager maddock innovator and a dramatic force economic growth, not to mention sparing human suffering. so i introduced this act and the notion behind it is very simple, 5%, real growth for 10 years and the nih, cdc department of defense. there is also another piece of the story that i might as well add. i had reference with the secretary at the department of energy and i told him this and he said that where you think the folks and others get the technology that they need for diagnosis. the department of energy. it turns out that it's obvious and my companion, the
5:45 am
innovations that tries to see 5% real growth in areas like the department of science and the department of energy. so that is what the motivation was. >> when you mention china you think of other large states that you see around the world that increasingly the area of high technology is considered a strategic industry and investment and they are able to put the government behind that. i understand the bill you put forth, but how would you raise this. i know you have confidence in your bill, but i worry. when i worked with just we seem to be a dereliction of responsibility. >> it turns out that if you stick with it, that this is one of those extraordinary political issues. i've said going to the most conservative audience that you
5:46 am
can. say let's talk for a few moments about biomedical research and watch what happened. all of the politics disappear because every single one of us knows how vulnerable we are. the vulnerability leads us to want to try to find that new drug, new surgery the new approach. there's a dollar side at the end. and it's a very human element. more and more from the conservative side in the republican party, who is my cochair in the senate, lindsey graham, he and i have a lot of differences politically but we have come together on this. you will have a guest here with susan collins and she is passionately committed to this. but what we have to do is be part of this. >> i haven't given up. hope springs eternal.
5:47 am
[laughter] >> a certifiable conservative missourian. look at what happened when he did his markup on the labor appropriations bill. he gave a bump of $2 billion, which is more than 5%. that's 5% plus inflation. it's pretty darn good, better than the house. and he did it at the expense of a lot of other good things with the bill. but he was sensitized by the researchers in st. louis. to the need for medical research. i believe that this process the spectrum. we need to reach the point where we take issue of innovation and say that this is a special consideration of the united states in the future. not subject to the basic budget control rules.
5:48 am
>> we showed last night an interview with chuck schumer and he was talking about how you guys were buddies and they could turn marco rubio around on immigration. you use this as a hunting ground to turn people over. who are some of your targets? was he lying? >> i go there daily. >> he also said that you said that republicans go early and democrats delayed. >> yes. >> i go there everyday for no obvious reason. [laughter] >> one of the first one is john and we talk about these issues and there's an opportunity there where your guard is down with all the rest of the stuff. i have solved some big problems
5:49 am
in the gym with my colleagues. and i think that are pushing this issue on the human side makes a big difference in trying to get beyond the dollars and cents and talk to people. and this is reaching into so many families across america. the alzheimer's challenge. we see what is coming. not only would cost to the government and the cost to the families and what they are going through. and i think that there is room for political coalition. >> susan collins is going to be joining us midway through and she has targeted 2025 as the target date that she thinks that alzheimer's treatment should be treated, calling this a vital national issue.
5:50 am
and you have a different approach looking at prevention and treatment by 2050. is there a difference? when you look legislatively and you talk to scientists. we have an incredible woman who raised $270 million in the largest biomedical first-round ever. when you see that amount of money coming into the private sector in alzheimer's related research where there is a neurodegenerative research and you look at technology are you being too modest for this target, when you think that perhaps we would be able to achieve more than we've ever been able to achieve? >> we can say that we see a 1% decline in cancer mortality. politicians like to set this and it gives us the ability to measure how we are doing.
5:51 am
the honest answer is that we don't know. did you see this cover story? i spent a lot of times looking at magazine racks and it jumped right off the rack and there was a cover story about what they are doing and it's promising. two different drugs come in two different approaches. but for example when it comes to this, in chicago it virtually has a full-time office are using the advanced photon source, trying to figure out how to match of the drug and make it work. but i do get it. that there are certain things that we had diagnostic tools and i can't remember exactly what it stands for they are now
5:52 am
using computers to do millions of tests in a short period of time it used to be unimaginable. what i'm saying is that the pace of change and discovery is almost impossible to predict. but to hold politicians to the target, that makes sense and that's why i took 10 years. and i don't know if that's the right number one but i know that if we are incentivized move towards those targets we are not going to olof and forget the responsibility. >> i heard you speak on so many different topics. you seem to find the software to where legislation could make a difference whether it's trade policy or technology. i got an e-mail a little while ago. this is really going to be out of left-field. and it says that it has nothing to do with what we are talking about today. it demonstrates how a car can be hacked remotely and this could be the kind of software that
5:53 am
could be a part of this. and this was a really sensational thing where it at marquee and richard blumenthal are throwing in the bill on the auto safety act. and it made me think that to sustain interest must be so hard that we have a lot of folks here today not only in this room but in washington coming to elevate the broader discussion on what is going on with research in this area and tomorrow it's packing the car. so what advice or counsel do you have for people who have been struggling for decades with such a dramatic problem on how to sustain interests? it seems to me a difficult challenge given the number of things hitting the legislative
5:54 am
docket. >> there was a man that became a head of the motion picture association. and he says that there's six words that we always put in a speech. and those are let me tell you a story. so when it comes to my world of politics i have to get beyond the numbers and statistics and tell you a story about a person affected by something. i found that to be the most erratic way to bring issues home to people so that they understand. how many stories do we have in this room enact thousands. what you need to do is to make sure that your member of congress hears those stories and understands what it means to a family and what they have been through. when we debated obamacare and ice it out in the street from my office with the tea party
5:55 am
people they said stop telling stories. every time they were going to dismiss this as big government, i said let me tell you stop telling stories. the point i'm getting to is that no matter what the issue and this one especially it's poignantly touching and personal, the story of medical research has so many different chapters. make sure that that member of congress understands. i have worked for years with the dreamers, trying to help those undocumented kids who grew up here. and it was partisan. trying to work out an agreement on something. she turned her staffer and set will that help her if we do it this way in a and it's a story that she heard and remembered her and brought her to the negotiating table. so never stop telling the stories. >> you are a member of the
5:56 am
bipartisan task worse on alzheimer's disease. how many members are there to . >> i can tell you i don't know the exact number, but it's in excess of 40. when we had the budget resolution on the floor and i took all of the medical research amendments and all of the democrats and republicans and said let's put everything in one amendment, susan went along with it and she said that she had the alzheimer's amendment specifically. and we had 42 or 43 that had cosponsored amendments when it came to medical research. now we were all together and that is the way this works in the way that you build the coalition. >> when you look at heart disease, alzheimer's has got the largest footprint out there in the costs are the highest as i understand them of all of these. but the level of research
5:57 am
dollars that the federal government spends is really a pathetic third or less of what you see going into similar rates. i'm interested structurally what you think is happening in this field that has made it difficult to step those numbers up. >> that's a good question. i am asked about it as long as i have been in the house and the than it how do you pick your research projects. and it is a deadly disease, it affects children. by and large it sounds like all the above. alzheimer's was identified as one of the medical diseases that they are going after in this new partnership and that's a pretty good sign. in this kind of specific investment research, it may turn out to be more productive than a
5:58 am
lot of other things. so i wouldn't dismiss it as by dollar amount. so when i talk about this being so important in developing things who would have guessed that that was biomedical research when we were developing it 10 or 20 or 30 years ago? but it is and there are many that come into the whole quest to find the answer. >> when you have talked about conservatives i would imagine that that would be very compelling. you go in there you have that discussion who is the opposition that needs to be taken down? >> the opposition is not specifically taken down. my bill 5% real growth cost
5:59 am
$150 billion. it's likely that we will spend in the neighborhood of $20 trillion on the federal budget during that time. it's a big sum of money. and so i started thinking about how we going to pay for it. well, for the longest time i have had this thing against tobacco. and the fact that you don't face this is part of it. as i said let's get real real it's going to go to medical research and i went to a conservative republican senator and i said medical research up
6:00 am
by 5%. so why. no taxes. >> it's people that have even sign this pledge on tobacco. and other states are doing this already. this includes legislatures and governors. so it isn't as though they are opposed to progress but restrictions on their power to appeal to the certain constituencies and i think you need to have the flexibility to make the right decisions for america's future. >> do you think that there is a perspective? it's also about living with caretakers and i

7 Views

info Stream Only

Uploaded by TV Archive on